Knee pain and PMR?

Posted by debbiebas216 @debbiebas216, Feb 15, 2025

I was diagnosed with PMR the end of October 2024 and have been on prednisone ever since and tapering. Right now I just increased from
8 mg to 9 mg (sometimes accompanying with Tylenol arthritis tablets) with pain typically shoulders and hips but it’s been somewhat manageable. My knees have been pretty painful (only after my diagnosis) mostly in the morning and if I sit for too long (1/2 hour or longer). Getting up from a sitting position is rough. My rheumatologist feels it’s not PMR related. I will make an appointment with my orthopedic to further check it out.
Does anyone else experience pain in their knees (mostly the back) and do you think it’s part of PMR? She also would like me to go on leflunomide, an immunosuppressant which is very scary to me that I’m avoiding. I believe besides being on leflunomide, I still have to stay on prednisone until I wean off of it. I live in the north east and the flu, rsv, etc right now is rampant and, in my mind, that puts a halt on my immune system leaving me susceptible to any one of those viruses (and cancer). I also read that it has a slow half life that could take 2 years to leave my system.
I just think that if I’m functioning, even with pain, I should stay the course on prednisone for now because prednisone is not a cure, but a med to reduce inflammation? So confused.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

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@kjoed53 yes. The doctor is working on getting me the actemra. Waiting on insurance. But I won’t be using prednisone with it. It’s a new Dr and the other Dr should not describe me rinvoq as it’s not for PMR. Wasted insurance money @ 5,700 for rinvoq that didn’t do anything except Made me feel worse with side effects.

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@tweet
Surprising that the insurance approved it. It's not uncommon for off label usage these days. I'm using LDN for help with pain while I taper prednisone

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@debbiebas216
I had two doctors confirm my PMR was from Covid vaccine and two doctors said they can’t confirm nor deny it was from Covid vaccine.

Glad you’re feeling better.

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@tweet so confusing and thank you for that. My doc at the time didn’t discuss Covid at all.

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Profile picture for turleyl @turleyl

I have had pain behind my knees for 5 years. It’s getting worse to where I have difficulty walking. I also have hip, back, and shoulder pain. I have a diagnosis of PMR. No doctor has heard of pain behind the knees with this, but I’m here to tell you it is real.

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@turleyl I can support you regarding the knee pain. I had terrible pain behind my knees. I was unknowingly dealing with PMR since October of 2025, but not officially diagnosed and treated until January of 2026. The majority of my pain was from the hips to the knees. My arms and shoulders were somewhat stiff and painful, but nothing compared to my lower body. When I tried to squat down to do yard work, the pain would tear through the back of my knees as if my tendons were being ripped away from the muscles. I quickly learned deep knee bends were off the table until prednisone controlled the inflammation. I’m at 5 mgs now, down from 20, and I can do squats once again. For reference, I’ve never had any kind of arthritis, so I’m convinced it was from the PMR. One additional note regarding the discussion on Covid and PMR. I did come down with Covid three months before my PMR symptoms hit. I had been keeping up with all the recommended booster vaccines as well. I asked my rheumatologist his thoughts about the connection, his opinion was there is no link between Covid, or booster vaccinations, and PMR. So it seems there’s as much variation in medical opinions regarding the cause of PMR as there is in the protocol for treating it.
I initially didn’t think I had PMR because my symptoms didn’t quite align with the “standard symptoms.” But I have learned not to let people disregard what you know you’re feeling. Everybody’s experience and journey is quite different. Doctors need to listen to patients and understand PMR is not a one size fits all. Wishing you well in your treatment and health.

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